HaDSoc Flashcards

1
Q

Define equity

A

everyone with the same need gets the same care

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
2
Q

Define adverse event

A

injury caused by medical management that prolongs hospitalisation, produces disability, or both

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
3
Q

Define a preventable event

A

adverse event that could be prevented given the current state of medical knowledge

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
4
Q

Why do patient safety problems occur?

A
Poorly designed systems that do not take into account human factors
Inadequate training
Long hours
Lack of checks
Culture
Behaviour
Over-reliance on individual responsibility
All humans make errors
How well did you know this?
1
Not at all
2
3
4
5
Perfectly
5
Q

What does failure to ensure that organisational systems are safe cause?

A
  • Focus on finding short term fixes
  • Encouragement of a heroic compensation
  • People rushing and making mistakes
  • Mistakes are tolerated
  • Safety is degraded.
How well did you know this?
1
Not at all
2
3
4
5
Perfectly
6
Q

What is an active failure?

A

an act that leads directly to patient harm

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
7
Q

What is a latent condition?

A

predisposing conditions that make active failures more likely to occur
They can be error provoking, or create long lasting problems

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
8
Q

What is the Swiss Cheese Model?

A

holes = opportunities for a process to fail. Some are active faliures, some are due to latent conditions.
slices = “defensive layers” against potential error impacting the outcome
For an error to occur, successive layers of barriers, defences and safeguards need to be breeched

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
9
Q

What are human factors?

A

psychological responses that are highly predictable

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
10
Q

What happens if situational awareness is lost?

A

people persist with the wrong course of action

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
11
Q

In what ways can we use a systems-based approach to promote good care?

A
  • Avoid reliance on memory
  • Make things visible
  • Review and simplify processes
  • Standardise common processes and procedures
  • Routinely use check lists
  • Decrease the reliance on vigilance
How well did you know this?
1
Not at all
2
3
4
5
Perfectly
12
Q

Define quality improvement

A

systematic effort to make changes that lead to better patient experiences and outcomes, system performance and professional development

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
13
Q

What are some NHS Quality Improvement Mechanisms

A
Standard setting
commissioning
financial incentives
disclosure
regulation
clinical audit
Data gathering and feedback
How well did you know this?
1
Not at all
2
3
4
5
Perfectly
14
Q

How does standard setting lead to quality improvement?

A

NICE sets quality standards on best available evidence

these are used to deliver high quality, clinical and cost effective care

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
15
Q

How does commissioning lead to quality improvement?

A

CCGs commission services

drives quality through competition

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
16
Q

How do financial incentives lead to quality improvement?

A

reward and penalise
QOF pays GPs based on results
efficient trusts make money
if never event occurs, the hospital receives no money for that patient’s treatment

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
17
Q

Describe the audit process

A
choose topic
look at the criteria and standards, taking evidence into account
evaluate
implement change
second evaluation
cycle back to criteria and standards!
How well did you know this?
1
Not at all
2
3
4
5
Perfectly
18
Q

Explain clinical governance

A

framework by which NHS organisations are accountable for continuously improving the quality of their services by creating an environment in which excellent clinical care will flourish

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
19
Q

Define evidence based practice

A

the integration of individual expertise with the best available external clinical evidence from systematic research

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
20
Q

What are some benefits of systematic reviews?

A
  • Help address clinical uncertainty
  • Highlight gaps in research
  • Appraise and integrate findings, meaning that quality is controlled so we can be more certain of our findings
  • Offer authoritative, up-to-date and generalizable conclusions
  • Save clinicians from having to locate and appraise studies for themselves
  • Reduce delay between research discoveries and implementation
  • Help to prevent biased decisions
  • Easily converted into guidelines and recommendations
How well did you know this?
1
Not at all
2
3
4
5
Perfectly
21
Q

What are some practical criticisms of evidence based medicine?

A
  • Creating and maintaining systematic reviews across all specialities may be an impossible task
  • Disseminating and implementing the findings may be challenging and expensive
  • RCTs are not always feasible
  • The outcomes considered are often biomedical, of little importance to patients, as well as limiting the interventions which can be trialled
  • Pharmaceutical companies need to be trusted about the quality of their RCTs
How well did you know this?
1
Not at all
2
3
4
5
Perfectly
22
Q

What are some philosophical criticisms of evidence based medicine?

A
  • Doctors want to know the mechanism of an outcome = deterministic causality, whereas EBP only shows what the outcome is = probabilistic causality.
  • Population level outcomes do not mean that an intervention will work for the individual
  • Potential for the creation of unreflective rule followers who do not consider patients as individuals due to NICE and clinical governance.
  • Could be used as a means of legitimising rationing, but just because a treatment is not cost-effective at a population level does not mean it is not effective to an individual patient.
  • The loss of professional responsibility and autonomy as clinical judgement is no longer as needed.
How well did you know this?
1
Not at all
2
3
4
5
Perfectly
23
Q

Why is it difficult to get evidence into practice?

A

Evidence exists but doctors do not know about it
• Ineffective dissemination?
• Doctors not keeping up to date?
Doctors know about the evidence but don’t use it
• Habit?
• Organisational culture?
• Professional judgement?
Organisational systems cannot support innovation
Commissioning decisions reflect different priorities
Resources are not available to implement the change
• Financial
• Human

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
24
Q

What is quantitative research?

A

the collection of numerical data
begins with a hypothesis and research
allows conclusions to be drawn about relationships between variables

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
25
Q

Give some methods of quantitative research

A
RCT
Cohort studies
Case-control studies
Cross-sectional surveys
Official statistics
Surveys – national, regional or local
How well did you know this?
1
Not at all
2
3
4
5
Perfectly
26
Q

Define valid

A

using an appropriate method to measure what you are trying to measure

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
27
Q

Define reliable

A

measuring consistently

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
28
Q

How can the validity and reliability of a questionnaire be ensured?

A

using a published questionnaire

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
29
Q

What advantages do quantitative methods have?

A

finding relationships

allowing comparisons

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
30
Q

What are the disadvantages of quantitative methods?

A

forces people into inappropriate categories
doesn’t allow people to express things in the way they want to
all important information may not be accessed
may not be able to establish causality

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
31
Q

What is qualitative research?

A

Aims to make sense of phenomena in terms of the meanings that people bring to them.
emphasises meaning, experience and views of the respondents.
Analysis emphasises the interpretations of the researcher.
The findings can also provide insights into people’s behaviour.

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
32
Q

Give some methods of qualitative research

A

observation and ethnography
interviews
focus groups
documentary and media analysis

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
33
Q

Describe observation used in qualitative research

A

Studying human behaviour in its natural context, observing what people actually do
Gains access to behaviour that individuals themselves may provide biased accounts of, be unaware of or not consider worth commenting on

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
34
Q

Describe interviews used in qualitative research

A

Semi-structured by using a prompt guide. There is a clear agenda of topics.
There is an emphasis on participants giving their own perspective, which the interviewer facilitates

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
35
Q

Describe focus groups used in qualitative research

A

quick method for defining the scope of a particular problem or for accessing group based collective understanding of an issue.
Not so useful in understanding individual experience as deviant views mat be inhibited and some topics may be too sensitive for focus groups
Difficult to arrange as a fairly homogenous group is needed and a good facilitator who can manage the group dynamics

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
36
Q

Describe documentary and media analysis used in qualitative research

A

Independent evidence eg. patient diaries
Provides a historical context
Useful for subjects difficult to investigate

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
37
Q

What are the advantages of qualitative research?

A

gain an understanding of people’s perspectives
access information that cannot be reached by quantitative research
explain relationships between variables

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
38
Q

What are the disadvantages of qualitative research?

A

difficult to find consistent relationships between variables

samples often not statistically representative, so findings cannot be generalised

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
39
Q

Why do deprived groups have higher use rates of GP and emergency services?

A

Health is managed as a series of crises, with health care only accessed when things become a problem

Ill health becoming normalised. People accept ill health rather than trying to do something about it

Event-based consulting required to legitimise a consultation, so the patient will only access health services when there is clearly something wrong

Difficulty marshalling resources needed for negotiation and engagement with health services e.g. employment, childcare, getting to the surgery

Tendency to use more ‘porous’ services

Lack of cultural alignment between health services and lower socioeconomic status

Doctor’s judgement of a patient’s technical and social eligibility may affect referrals and offers of healthcare

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
40
Q

What is the Artefact explanation for health inequalities?

What is a limitation of this explanation?

A

health inequalities are evident because of the way statistics are collected
They are not really there!

data problems would lead to an underestimation of inequalities

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
41
Q

What is the Social Selection explanation for health inequalities?

What is a limitation of this explanation?

A

a person’s health status leads to their social position
Chronically ill and disabled are more likely to be disadvantaged

diseases that take longer to kill would be more prevalent in lower socioeconomic groups

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
42
Q

What is the Behavioural-Cultural explanation for health inequalities?

What is a limitation of this explanation?

A

ill health is due to people’s decisions, knowledge and goals
People from disadvantaged backgrounds tend to engage in more health damaging behaviours, while people from advantaged backgrounds tend to engage in more health-promoting behaviours

in adverse conditions, decisions may be difficult to exercise
choices may not be available for those whose lives are constrained by a lack of resources

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
43
Q

What is the Materialist explanation for health inequalities?

What is a limitation of this explanation?

A

inequalities arise form differential access to material resources and exposure to hazards or constraints (income, environment, occupation, housing). People have a lack of choice in what factors they are exposed to. Accumulations of factors over lifetime

further research is needed to determine the precise routes through which material deprivation causes ill health

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
44
Q

What is the Psychosocial explanation for health inequalities?

A

Stressors (negative life events, social support, job security) are distributed on a social gradient
stress impacts on health directly and indirectly

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
45
Q

What is the Income Distribution explanation for health inequalities?

What is a limitation of this explanation?

A

Relative income affects health. Countries with greater income inequalities have greater health inequalities.
It is the most egalitarian societies that have the best health
Social cohesion is important for health

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
46
Q

Define inequality

A

when things are not equal

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
47
Q

Define inequity

A

inequality that is unfair or unavoidable

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
48
Q

Define a lay belief

A

how people understand and make sense of health and illness
constructed by people with no specialised knowledge they are socially embedded and very complex
draw on cultural, social and personal knowledge and experience and a patient’s own biography

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
49
Q

Define health behaviour

A

activity undertaken for the purpose of maintaining health and preventing illness

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
50
Q

Define illness behaviour

A

activity of ill person to define illness and seek solution

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
51
Q

What is the illness/symptom iceberg?

A

most symptoms experienced by patients will never be known by a doctor

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
52
Q

What is the lay referral system ?

A

chain of advice seeking contacts which the sick make with other lay people prior to – or instead of – seeking help from health care professionals.

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
53
Q

What is the negative definition of health?

What demographic is this definition most common in?

A

health = the absence of illness

Most common in low SE groups

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
54
Q

What is the Functional definition of health?

What demographic is this definition most common in?

A

health = the ability to do certain things.

Most common in the elderly

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
55
Q

What is the positive definition of health?

What demographic is this definition most common in?

A

health = state of wellbeing and fitness.

Most common in high SE

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
56
Q

In terms of adherence, describe a denier

Do these people adhere to treatment?

A

= those who deny they have a condition/having the ‘proper’ disease.
claim that their symptoms do not interfere with their everyday life
use complex and drastic strategies to hide their disease. T

they will not adhere to their treatment, due to not accepting their disease identity

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
57
Q

In terms of adherence, describe an acceptor

Do these people adhere to treatment?

A

= those who accept their disease diagnosis and doctor’s advice completely.

Yes! They take control of their symptoms through medication and do not see their disease identity as a stigma.

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
58
Q

In terms of adherence, describe a pragmatist

Do these people adhere to treatment?

A

= those who use preventative treatment, but only when their symptoms get very bad. See their disease as a mild illness.

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
59
Q

Which definition of health is useful in health promotion?

Why?

A

A positive definition of health

it looks at health as something that can be maintained and worked towards

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
60
Q

Why are those from a lower socioeconomic group not follow health promotion advice?

A

focus is on improving the immediate environment

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
61
Q

Why are those of a higher social class more likely to follow health promotion advice?

A

focused on long term investments

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
62
Q

What are determinants of health?

A

a range of factors that have a powerful and cumulative effect on the health of populations, communities and individuals.
Includes:
physical environment
social and economic environment
individual genetics, characteristics and behaviours.

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
63
Q

What is public health?

A

reform of physical environment to improve health

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
64
Q

What is health education?

A

targeting individual health behaviour to improve health

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
65
Q

What is health promotion?

A

the process of enabling people to increase control over and to improve their health

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
66
Q

What are the principles of health promotion?

A

Empowering = enabling individuals and communities to assume more power over health determinants
Participatory = Involving all concerned at all stages of the process
Holistic = Fostering physical, mental, social and spiritual health
Intersectoral = Agencies from relevant sectors collaborate
Equitable
Sustainable = changes that individuals and communities can maintain once funding has ended
Multi-strategy

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
67
Q

State the approaches to health promotion

A

Medical or preventative = encouraging people to seek help
Behaviour change
Educational
Empowerment = a patient’s health is their own responsibility
Social change

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
68
Q

What is primary prevention?

A

preventing the onset of disease or injury by reducing exposure to risk factors

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
69
Q

State some primary prevention strategies

A

immunisation
prevention of contact with environmental risk factors
Taking appropriate precautions with communicable diseases
Reducing risk factors from health related behaviours

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
70
Q

What is secondary prevention?

A

to detect and treat a disease (or its risk factors) at an early stage
prevents progression or potential complications and disabilities from the disease in the future

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
71
Q

State some secondary prevention strategies

A

screening

monitoring

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
72
Q

What is tertiary prevention?

A

minimises the effects of an established disease

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
73
Q

State some tertiary prevention strategies

A

maximising remaining capabilities of a disabled patient
giving steroids for asthma to prevent asthma attacks
giving a renal transplant

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
74
Q

How can health promotion lead to a neglect of public health?

A

the focus on individual responsibility

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
75
Q

What are some dilemmas of health promotion?

A
interfering in people's lives
victim blaming
fallacy of empowerment
reinforcing negative stereotypes
unequal distribution of responsibility
the prevention paradox
How well did you know this?
1
Not at all
2
3
4
5
Perfectly
76
Q

Explain how health promotion raises issues about the ethics of interfering in people’s lives

A

potential psychological impact of health promotion messages leads to high levels of anxiety, especially if people cannot address the problem.
The idea of a ‘Nanny State’ is also a worry – do people have a right to make their own choices?

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
77
Q

Explain how health promotion raises issues of victim blaming

A

Focus on individual behavioural change plays down the impact of wider socioeconomic and environmental determinants on health

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
78
Q

Explain how health promotion raises issues about the Fallacy of Empowerment

A

Giving people information does not give them power. Unhealthy lifestyles are not often due to ignorance but due to adverse circumstances and wider socioeconomic determinants of health.

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
79
Q

Explain how health promotion raises issues of unequal distribution of responsibility

A

The implementation of healthy behaviours in the family is often left up to women

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
80
Q

Explain how health promotion raises issues about the prevention paradox

A

Interventions that make a difference at a population level often have little effect at an individual level.
If people don’t see themselves as a candidate for a disease they will not take on health promotion messages!

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
81
Q

What is evaluation?

A

rigorous and systematic collection of data to assess the effectiveness of a programme in achieving predetermined objectives

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
82
Q

Why is evaluation needed?

A

evidence based interventions can be found
interventions are found to be legitimate = accountability
it is ensured there is no direct or indirect harm = ethical
programmes can be managed and developed

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
83
Q

What is process evaluation?

A

assessing the process of programme implementation

Employs a wide range of mainly qualitative methods

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
84
Q

What is impact evaluation?

A

assessing the immediate effects of an intervention

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
85
Q

What is outcome evaluation?

A

measuring the longer term consequences.
The timing of the evaluation can influence the outcome, for example there may be a delay (interventions take a long time to have an effect) or decay (some interventions wear off rapidly)

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
86
Q

What are some difficulties of evaluation?

A

possible time lag to effect
confounding factors
high cost
the intervention design makes it difficult to assess

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
87
Q

Define illness narrative

A

the story-telling and accounting of practices that occur in the face of illness

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
88
Q

What is illness work?

A

= work performed when getting a diagnosis,
managing the symptoms of a chronic illness,
dealing with the physical manifestations of the disease and must be done before being able to cope with social relationships.

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
89
Q

What is everyday life work?

A

=managing daily living

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
90
Q

Define coping

A

the cognitive processes involved in dealing with illness

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
91
Q

Define strategy

A

the actions and processes involved in managing the condition and its impact

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
92
Q

Describe the process of normalisation

A

A patient can choose to keep their pre-illness life style and identity intact by disguising or minimising their symptoms, or they can designate their new life as “normal life”. This would signal a change in identity, rather than preserving an old one.

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
93
Q

What is emotional work?

A

= managing one’s own emotions and those of others.
This is the work that people do to protect the emotional well-being of the people around them.
Patients will make a conscious effort to deliberately maintain normal activities.
If people do find friendships disrupted, it may be easier for them to withdraw or restrict their social terrain.
Patients may downplay pain or other symptoms, presenting a ‘cheery version’ of themselves.

How well did you know this?
1
Not at all
2
3
4
5
Perfectly
94
Q

What is biographical work?

A

= reconstruction of biography.
There is a biological shift from a perceived normal trajectory to an abnormal trajectory.
A former self-image often crumbles away without the simultaneous development of equally valued new ones = loss of self.
There is a constant struggle to lead a valued life and maintain a positive definition of self. Patients can often feel that their body is letting them down.

95
Q

What is identity work?

A

= work to maintain an acceptable identity.
This is the consequence of actual and imagined reactions of others. Illness can become a defining aspect of someone’s identity.

96
Q

What are the advantages or self-management?

A

improving the patients coping skills
improving condition management skills
reducing hospital admissions
more patient centred approach

97
Q

What are the disadvantages or self-management?

A

difficult to achieve
responsibility of care is placed on very ill patients, which may be difficult for the patient to cope with.
little evidence of efficiency savings from this approach.

98
Q

Define stigma

A

negatively defined condition, attribute, trait or behaviour conferring a deviant status.

99
Q

What is discreditable stigma

A

nothing can be seen from the outside,
BUT if it was found out there would be a problem.
E.g. mental illness, HIV

100
Q

What is discredited stigma?

A

physically visible characteristic or well-known stigma which sets a person apart e.g. physical disability, known suicide attempt

101
Q

What is enacted stigma?

A

the real experience of prejudice, discrimination and disadvantage as the consequence of a condition

102
Q

What is felt stigma?

A

the fear of enacted stigma. The feeling of shame associated with having a condition. This can lead to selective concealment.

103
Q

Explain the Medical Model of Disability

A

Disability is a deviation from medical norms

disadvantages are a direct consequence of impairment. People are in need of medical interventions to cure of help them.

104
Q

What are some limitations of the Medical Model of Disability?

A

lack of recognition of the social and psychological factors involved in disability
use of stereotyping and stigmatising language.

105
Q

Explain the Social Model of Disability

A

Problems are a product of the environment and failure of the environment to adjust.
Disability is therefore a form of social oppression.
Political action and social change are needed to overcome these problems.
Society often fails to take account of people with impairments.

106
Q

What are some limitations of the Social Model of Disability?

A

There may be a failure to recognise the bodily realities and the extent to which these are solvable socially.

107
Q

According to the International Classification of Impairments, Disabilities or Handicaps, define:
impairment
disability
handicap

A

-Impairment: concerned with abnormalities in the structure or functioning of body

– Disability: concerned with performance of activities

– Handicap: concerned with broader social and psychological consequences of living with impairment and disability

108
Q

What are the limitations of the International Classification of Impairments, Disabilities or Handicaps?

A

problematic use of the word handicap.
implies that problems are intrinsic or inevitable.
based on the medical model of disability.

109
Q

What is the International Classification of Functions, Disability and Health?

A

WHO’s framework for measuring health and disability at both individual and population levels to describe and measure health and disability.
It attempts to integrate medical and social models, and recognise significance of wider environment.

110
Q

What are the components of the International Classification of Functions, Disability and Health?

A

Body structures and functions, and impairments
Activities undertaken by individual, and the difficulties/limitations experienced in doing them
Participation or involvement in life situations, which may become restricted
Environmental and personal factors

111
Q

Why are healthcare outcomes measured?

A

give an indication of the need for healthcare,
target resources where they are most needed,
assess the effectiveness of health interventions,
evaluate the quality of health services,
monitor patients’ progress
use these evaluations to get better value for money.

112
Q

Discuss the advantages of using mortality as a measure of healthcare outcomes

A

easily defined

113
Q

Discuss the disadvantages of using mortality as a measure of healthcare outcomes

A

not always recorded accurately.

It is not a good way of assessing the outcomes and quality of care.

114
Q

Discuss the advantages of using morbidity as a measure of healthcare outcomes

A

routinely collected

115
Q

Discuss the disadvantages of using morbidity as a measure of healthcare outcomes

A

collection is not often reliable or accurate.
We do not learn anything about patient’s experiences
the data is not easy to use in evaluation

116
Q

What are patient reported outcome measures?

A

attempt to assess well-being from the patient’s point of view.
PROMs are measures of health that come directly from patients.
They compare scores before and after treatment or over a longer period of time.

117
Q

How can patient reported outcomes measures be used?

A
  • clinically
  • to assess benefits in relation to cost
  • in clinical audit
  • to measure the health status of populations
  • to compare interventions in a clinical trial
  • as a measure of service quality
118
Q

What are the benefits of using patient reported outcome measures?

A

improve the clinical management of patients
allow for the comparison of providers, which increases their productivity by creating demand management
improves care quality though patient choice, purchasing and payment for performance.

119
Q

What are the challenges of using patient reported outcome measures?

A
  • the time and cost of collection, analysis, and presentation of data
  • Achieving high rates of patient participation
  • Providing appropriate output to different audiences
  • Avoiding misuse of PROMs
120
Q

Define Health Related Quality of Life

A

the functional effect of an illness and its consequent therapy upon a patient, as perceived by the patient’

121
Q

What does HRQoL take into account?

A

• Physical function
o Mobility, dexterity, range of movement, physical activity, activities of daily living
• Symptoms
o Pain, nausea, appetite, energy, vitality, fatigue, sleep, rest
• Global judgements of health
o What does the patient think health means? Shaped by society and culture
• Psychological wellbeing
o anxiety, depression, coping, positive well-being and adjustment, sense of control, self-esteem
• Social wellbeing
o Family and intimate relations, social contact, integration, social opportunities, leisure activities, sexual activity and satisfaction
• Cognitive functioning
o Cognition, alertness, concentration, memory, confusion, ability to communicate
• Personal constructs
o Satisfaction with bodily appearance, stigma, life satisfaction, spirituality
• Satisfaction with care

122
Q

What are the advantages of using a generic instrument to assess HRQoL?

A

Used for a broad range of health problems
Used if there is no disease specific instrument
Enable comparisons across treatment groups
Used to detect unexpected effects of an intervention
Used to assess the health of populations

123
Q

What are the disadvantages of using a generic instrument to assess HRQoL?

A

Less detailed
Loss of relevance if too general
Less sensitive to changes that are a result of an intervention
Less acceptable to patients

124
Q

What is the SF-36?

A
a generic HRQoL measure
It asks questions relating to eight dimensions:
-	Physical functioning
-	Social functioning
-	Role functioning (physical)
-	Role functioning (emotional)
-	Bodily pain
-	Vitality
-	General health
-	Mental health

Patient’s responses to the questions are scored and the scores for items within each dimension are added together. This score is transformed to give each respondent’s score for each dimension (0-100). You are NOT allowed to add up the dimensions to give an overall score

125
Q

What are the advantages of using the SF-36 as a measure of HRQoL?

A

acceptable to the patients completing it.
takes 5-10 minutes to complete.
has a good internal consistency
is responsive to change
There is population level data available
it has been well validated and tested for reliability.

126
Q

What is the EuroQol EQ-5D?

A
generic HRQoL measure
It generates a single index value for health status on which full health = 1 and death = 0. 
It assesses five dimensions:
•	Mobility
•	Self-care
•	Usual activities (e.g. work,study, housework, family or leisure activities)
•	Pain/Discomfort
•	Anxiety/Depression

Patients say whether they have no problems, moderate problems or extreme problems relating to each dimension.

127
Q

What are the advantages of using the EuroQol EQ-5D as a measure of HRQoL?

A

widely used,
good population data available,
has been well validated and tested for reliability.

128
Q

What are the advantages of using a disease/site/dimension specific instrument to assess HRQoL?

A

Relevant content
Sensitive to change
Acceptable to patients

129
Q

What are the disadvantages of using a disease/site/dimension specific instrument to assess HRQoL?

A

Not able to be used in those who don’t have the disease
Comparison is limited
May not detect unexpected effects

130
Q

How does disclosure improve quality of care?

A

Focus on safety, effectiveness and experience of patients

131
Q

Define screening

A

a public health service
members of a defined population, who do not necessarily perceive they are at risk of, or are already affected by a disease or its complications, are asked a question or offered a test,
to identify those individuals who are more likely to be helped than harmed by further tests or treatment to reduce the risk of a disease or its complications

132
Q

What criteria relating to the disease are used when implementing a screening programme?

A

an important health problem
epidemiology and natural history is well understood
an early detectable stage
cost-effective primary prevention interventions must have already been considered and where possible implemented

133
Q

What criteria relating to the test are used when implementing a screening programme?

A

simple,
safe,
precise,
valid
acceptable to the population.
The distribution of test values in the population must be known i.e. the proportion who test positive and negative
an agreed cut-off level for who is counted as test-positive must be defined.
There must be an agreed policy on whom to investigate further.

134
Q

Define a false-positive

A

non-cases who test positive

135
Q

What are the problems involved with false positive results?

A

puts patients through stress, anxiety and inconvenience
turns people into ‘patients’ when they are not actually ill
creates direct costs and opportunity costs.
may lead to lower uptake of screening in the future

136
Q

Define a false-negative

A

cases who test negative

People who do actually have an early form of the disease will fail to be referred

137
Q

What are the problems involved with false negative results?

A

creates inappropriate reassurance
may delay a patient’s presentation with symptoms
patients not offered diagnostic testing when they could have benefited from
their disease will not be diagnosed

138
Q

What are the four measures of test validity?

A

sensitivity
specificity
positive predictive value
negative predictive value

139
Q

Define sensitivity

How is this calculated?

A

The proportion of people with the disease who are test positive

true positives + false negatives

first column

140
Q

Describe the lay out of the screening calculation table

A

horizontal = disease present, disease absent

vertical = positive test, negative test

141
Q

If a test has a high sensitivity, what is it good at?

A

correctly identifying those with the disease

142
Q

Define specificity

How is this calculated?

A

the proportion of the people without the disease who are test negative

false positives + true negatives

second column

143
Q

If a test has a high specificity, what is it good at?

A

correctly identifying people without the disease as not having the disease

144
Q

If the same test is applied to a different population, what will happen to the sensitivity and specificity?

A

stay the same!

they are a function of the characteristics of the test

145
Q

Define PPV

How is this calculated?

A

the probability that someone who has tested positive actually has the disease

true positives + false negatives

first row

146
Q

What is the PPV influenced by?

A

prevalence

low prevalence = low PPV

147
Q

If a test has a low PPV, what does this mean?

A

there will be a lot of people with false positive results who undergo stress and unnecessary procedures

148
Q

Define NPV

How is this calculated?

A

the proportion of the people who are test negative who actually do not have the disease

false negative + true positive

second row

149
Q

What criteria relating to the treatment are used when implementing a screening programme?

A

There must be effective evidence based treatment available
early treatment must be advantageous
There must be an agreed policy on whom to treat. Clinical management of the condition and patient outcomes should be optimised in health care providers before participation in screening programme

150
Q

What criteria relating to the programme are used when implementing a screening programme?

A
  • Proven effectiveness (preferably with RCT data)
  • Quality assurance for the whole programme not just the test
  • Facilities for counselling
  • Facilities for diagnosis and treatment
  • Other options should be considered e.g. improving treatment
  • Think about opportunity costs
  • Decisions about parameters should be scientifically justifiable to the public
  • Benefit should outweigh physical and psychological harm (test, diagnostic procedures or treatment)
151
Q

How does lead time bias occur when evaluating screening programmes?

A

Early diagnosis falsely appears to prolong survival because screened patients appear to survive longer. However this is only because they were diagnosed earlier. Patients live the same length of time, but longer knowing they have the disease.

152
Q

How does length time bias occur when evaluating screening programmes?

A

Screening programmes are, by design, better at picking up slow growing, unthreatening cases of a disease than aggressive, fast-growing cases.
Therefore, diseases that are detectable through screening are more likely to have a favourable prognosis, and may indeed never have caused a problem in the future.
This could lead to false conclusion that screening is beneficial in lengthening the lives of those found positive.

153
Q

How does selection bias occur when evaluating screening programmes?

A

Studies of screening are often skewed by the ‘healthy volunteer’ effect.
Those who have regular screening are also likely to do other things that protect them from disease.

154
Q

How could screening alter the doctor-patient contract?

A

usually, people self-present asking for help, so define themselves as patients.

screening targets apparently healthy people who have not sought the help of the health service with the offer of help for something they may have never thought about.

155
Q

What are the limitations of screening?

A

Screening cannot offer a guarantee of protection.
Screening carries a potential for harm as well as benefit. Due to false positives, screening leads to people being investigated and treated unnecessarily.
The complexity of screening programmes can be unhelpful

156
Q

Explain the structural critiques of screening

A

• Victim blaming
Screening encourages individuals to take responsibility for their own health, however not all individuals are equally able to do this.
• Individualising pathology
This leads to professionals not addressing the underlying material causes of a disease

157
Q

Explain the surveillance critiques of screening

A

Individuals and populations are increasingly subject to surveillance
Prevention could be part of a wider apparatus of social control

158
Q

Explain the social constructionist critiques of screening

A

• Health and illness practices can be seen as moral – people can gain meaning through particular social relationships

159
Q

Explain the social feminist critiques of screening

A

is screening targeted more at women?

160
Q

Who has an overall accountability for the NHS?

A

Secretary of State

161
Q

What is the Department of Health’s role?

A

sets national standards

sets national tariffs - fee for services charged by service providers to commissioners

162
Q

What is the role of NHS England?

A

authorises Clinical Commissioning Groups
supports develops and performance-manages commissioning .
commissions specialist services and primary care

163
Q

Who are the CCGs accountable to?

A

NHS England

164
Q

What is the role of clinical commissioning groups?

A

commission secondary and community healthcare services

165
Q

Who is responsible for public health?

A

local authorities

166
Q

Where can care be commissioned from?

A

o NHS acute trusts (hospitals) for much acute care
o Community healthcare trusts
o Other providers, including the private sector

167
Q

What are some examples of management roles for doctors?

A

o Medical director (overall responsibility for medical quality)
o Clinical director (overall responsibility for directorate)
o Consultant (responsibility for team)
o General practitioner –practice principal or partner

168
Q

What is the role of a clinical director?

A

leads a clinical directorate - group within a hospital trust
• manage their directorate as a whole
• provide continuing medical education and other training
• design and implement directorate policies on junior doctors’ hours of work, supervision, tasks and responsibilities
• Implement clinical audit
• Develop management guidelines and protocols for clinical procedures
• Induction of new doctors

169
Q

What is the role of a medical director?

A

communicate between the board and the medical staff. Work in partnership with HR/personnel
• Approve job descriptions, interview panels, equal opportunities and discretionary pay awards
• Oversee disciplinary processes
• Lead an organisation’s clinical policy and clinical standards
• Have a strategic overview of medical staff’s role in the organisation
• Sit on the organisation’s Board of Directors—a key link between senior management and the medical staff

170
Q

What are some skills involved in management?

A
  • Strategic - ability to analyse, plan, make decisions
  • Financial - ability to set priorities and manage a budget
  • Operational - ability to run things, execute plans
  • Human resources - ability to manage people and teams
171
Q

Why is rationing inevitable?

A

the scarcity of resources means that demand outstrips supply

172
Q

Explain the process of explicit rationing

A

There are defined rules of entitlement
institutional procedures are used in the systematic allocation of resources
Care is limited, but the decisions and reasons for this are made clear

173
Q

What are the advantages of explicit rationing?

A
  • Transparent, accountable
  • Opportunity for debate
  • More clearly evidence based
  • More opportunities for equity in decision making
174
Q

What are the disadvantages of explicit rationing?

A
  • Very complex
  • Heterogeneity of patients and illnesses not catered for
  • Patient and professional hostility
  • Impacts on clinical freedom
  • Some evidence of patient distress
175
Q

Explain the process of implicit rationing

A

Care is limited, but neither the decisions, nor the bases for those decisions, are clearly expressed.
The allocation of resources is through individual clinical decisions without the criteria for those decisions being explicit

176
Q

What are the disadvantages of implicit rationing?

A

It can lead to inequities and discrimination

Decisions are based on perceptions of “social deservingness”

177
Q

What are the advantages of implicit rationing?

A

more sensitive to the complexity of medical decisions

more sensitive to the needs and personal and cultural preferences of patients.

178
Q

Why was NICE set up?

A

to enable the integration of clinical evidence and cost effectiveness
to inform a national judgement on the value of a treatment
relative to alternative uses of resources

179
Q

What is the role of NICE?

A

provides guidance on whether treatments can be recommended for use in the NHS in England
to make sure that effective and cost effective products are made available to patients quickly
to minimise variations in the availability of treatments

180
Q

Describe a controversy surrounding NICE

A

If expensive treatments are not approved by NICE, patients are effectively denied access to them

If they are approved, local NHS organisations must fund them, sometimes with adverse consequences for other priorities

181
Q

Why is economic assessment of health needed?

A
  • recognises the reality of fixed NHS resources and brings this to the attention of the public,
  • exposes the opportunity costs of new interventions,
  • enables consistency in investment – and disinvestment – decisions
  • Helps to direct innovation towards health system priorities
182
Q

Define scarcity

A

Need outstrips resources.

183
Q

Define effectiveness

A

The extent to which an intervention produces desired outcomes

184
Q

Define efficiency

A

Getting the most out of limited resources

185
Q

What is technical efficiency?

A

finding the most efficient way of meeting a need

186
Q

What is allocative efficiency?

A

choosing between the many needs to be met

187
Q

What is an opportunity cost?

A

measured in BENEFITS FOREGONE.
the cost of committing resources to produce a good or service is the benefits you lose from those same resources not being used in their next best alternative

188
Q

What is economic evaluation?

A

the comparison of resource implications and benefits of alternative ways of delivering healthcare

189
Q

How are the costs of an intervention measured?

A
Costs of the health care services 
Costs of the patient’s time 
Costs associated with care-giving 
Other costs associated with illness 
Economic costs borne by the employers, other employees and the rest of society
190
Q

How can the benefits of an intervention be measured?

A

– Impact on health status
– Savings in other health care resources (such as drugs, hospitalisations, procedures, etc.) if the patient’s health state is improved
– Improved productivity if patient, or family members, returns to work earlier

191
Q

How is cost minimisation analysis carried out?

A

All outcomes are assumed to be equivalent

the focus of measurement is on costs (i.e. only the inputs).

192
Q

What is a criticism of cost minimisation analysis?

A

outcomes are rarely equivalent

193
Q

How is cost effectiveness analysis carried out?

A

used to compare interventions which have a common health outcome.

Interventions are compared in terms of cost per unit outcome.
If costs are higher for one treatment, but benefits are too, a calculation of how much extra benefit is obtained for the extra cost needs to be done.

Key question: Is extra benefit worth extra cost?

194
Q

How is cost benefit analysis carried out?

A

All inputs and outputs are valued in monetary terms.

allows comparison with interventions outside healthcare.

195
Q

What is a criticism of cost benefit analysis?

A

methodological difficulties
e.g. putting monetary value on non-monetary benefits such as lives saved. “Willingness to pay” often used as a tool, but this can be problematic.

196
Q

How is cost utility analysis carried out?

A

focuses on quality of health outcomes produced or foregone.

197
Q

What is the most frequently used cost utility analysis measure?

A

quality adjusted life year (QALY)

Composite of survival and quality of life

198
Q

What are the advantages of using QALYs in resource allocation?

A

measure of both quantity and quality of life

199
Q

What are the disadvantages of using QALYs in resource allocation?

A

Do not distribute resources according to need, but according to the benefits gained per unit of cost
May disadvantage common conditions
Technical problems with their calculations
QALYs may not embrace all dimensions of benefit; values expressed by experimental subjects may not be representative
QALYs do not assess impact on carers or family
RCT evidence is also not perfect
o Comparison therapies may differ
o Length of follow-up
o Atypical care
o Atypical patients
o Limited generalisability
o Sample sizes

200
Q

Why has there been an increased interest in patients’ views of health services?

A

Evidence that patient satisfaction is an important outcome in its own right and is linked to other outcomes
Rejection of paternalism, growth of consumerism
Increased external regulation of health services
emphasis on accountability
Means of securing legitimacy

201
Q

What did the NHS Plan emphasise?

A

organising care around the patient

accountability to patients

202
Q

What did the NHS Act emphasise?

A

organisations to “involve and consult” patients and the public in:
– Planning services they are responsible for
– Developing and considering changes in the way those services are provided
– Decisions that affect how those services operate

203
Q

How can patient’s views of healthcare be assessed qualitatively?

A

Interviews,
focus groups
observation

204
Q

What are the advantages of assessing patient’s views of healthcare quantitatively?

A
  • Relatively cheap and easy to conduct
  • Less staff training required
  • Anonymity more easily guaranteed
  • Standardised responses makes analysis easier
205
Q

What aspects of communication with healthcare professionals causes patient dissatisfaction?

A

o Patients not able to share their concerns fully on their own terms
o Full histories of the presenting problem not always taken
o Staff do not convey reassurance
o Staff do not provide appropriate advice

206
Q

What aspects of the content of healthcare causes patient dissatisfaction?

A
o	Inconvenience, continuity, access, poor hygiene standards
o	“Hotel” aspects of care
o	Waiting times
o	Culturally inappropriate care
o	Competence
o	Health outcomes
207
Q

What are some of the challenges of using patients’ evaluations to assess quality?

A

Sometimes patients’ views may not be reasonable or rational – what then?

How to locate responsibility and/or know what to do? Is it a system or individual’s failure?

How much resource should be diverted to satisfying issues that give rise to complaints? Will these always be the right places to spend money?

How should patients’ concerns about someone’s clinical competence and/or fitness to practice be viewed?

208
Q

Explain functionalism in regards to the patient-professional relationship

A

falling ill is a socio-cultural experience.
lay people don’t have the technical competence to remedy their situation.
The sick person is placed in a state of helplessness. Medicine acts to restore people to good health and by so doing restores social equilibrium.

209
Q

Outline the characteristics of the sick role in functionalism

A

– Being ill presents itself as a legitimate reason to be freed of social responsibilities and obligations
– The sick person is placed in a situation of dependence
– The sick person should want to get well and not abuse their legitimised exemption from normal responsibilities
– The sick person is expected to seek out the requisite technical help in the role of the physician and cooperate with them in the healing process

210
Q

Outline the doctor’s role in functionalism

A

tending to sickness in society

– Doctors should use skills for the benefit of patients; act for the welfare of patients rather than their own self-interests; be objective and non-discriminatory
– Doctors granted intimate access to patients; autonomy; status; financial reward in order to allow them to use their skills

211
Q

Describe the criticisms of functionalism

A

The sick role is not well thought out - chronic illness

assumes that patients are incompetent and must have passive role.

assumes the rationality and beneficence of medicine

212
Q

Outline the conflict theory in regard to the patient-professional relationship

A

The doctor holds bureaucratic power and has a monopoly on defining health and illness which they can exploit.
The patient has little choice but to submit to the institutionalised dominance of the doctor
Lay ideas are marginalised and discounted.
Medicine is able to colonise areas previously in the control of the ay public, and can pathologise aspects of social life.

213
Q

What is cultural iatrogenesis?

A

people become dependent on medicine, lose self-reliance and become sick

214
Q

Describe the criticisms of the conflict theory

A

Patients are not (always) passive – can exert control through non-adherence or the use of complementary therapies.
Patients may appear deferential in consultation but assert themselves outside of this.
Patients can also seek to ‘medicalise’ issues, too

215
Q

What are the features of a patient centred consultation?

A
  • Explores the patient’s main reason for the visit, their concerns and need for information
  • Seeks an integrated understanding of the patient’s world
  • Finds common ground on what the problem is and mutually agrees management;
  • Enhances prevention and health promotion;
  • Enhances the continuing relationship between the patient and doctor.
216
Q

Name an aspirational model of the patient-professional relationship

A

Patient-centred/partnership models

217
Q

Name explanatory models of the patient-professional relationship

A

Functionalism

Conflict theory

218
Q

What does the patient contribute to the Patient-Centred consultation?

A
  • their concerns and priorities in relation to presenting problems,
  • their personal perceptions of costs and benefits of interventions,
  • complex judgements about the severity of their health problems and unwillingness to undergo risk, discomfort, or other potential costs
  • the trade-off issues of survival at cost of quality of life
219
Q

What are the challenges of shared decision making with patients?

A
  • People who don’t want to share decision-making
  • Unknown consequences of involvement
  • Under what circumstances could/should the power of patients be limited?
  • Who does final responsibility rest with?
  • Is there time to achieve this?
220
Q

Why has there been an increased interest in complementary therapies?

A
  • symptoms are not relieved by conventional treatment
  • real or perceived adverse effects of conventional treatment
  • preference for a holistic approach to their treatment
  • more time and attention in their treatment because they are paying for it!
  • increasing availability and demand
  • Reported high level of satisfaction
221
Q

What are implications for patients of the use of complementary therapies?

A
  • Social factors – inequalities in ability to afford it
  • Unqualified and unregulated practitioners – concerns about safety
  • Risk of missed or delayed diagnosis
  • Refusal of conventional treatment
  • Waste money on ineffective treatments
  • There is no evidence base for the majority of complementary therapies
222
Q

What is a profession?

A

a type of occupation able to make distinctive claims about its work practices and status

223
Q

What is professionalization?

A

the social and historical process that results in an occupation becoming a profession.

224
Q

What does professionalization involve?

A
  • Asserting an exclusive claim over a body of knowledge/expertise
  • Establishing control over market and exclusion of competitors
  • Establishing control over professional work practice
225
Q

How did medicine undergo professionalization?

A

1858 Medical Act – gave the General Medical Council power over registration of doctors.
controlled entry and removal from medical register
approved and inspected medical schools
created the doctrine of clinical autonomy – only doctors had enough expertise to monitor and control the work of other doctors

226
Q

What is socialisation?

A

the process by which professionals learn during their education and training the behaviours and attitudes necessary to assume their professional role

227
Q

Explain the process of self-regulation

A

The interests of profession are seen as the best guarantee of the interests of the public.
any individual admitted to the profession could be assumed to be of good character and competence. It was thought that socialisation and peer-norming would be enough to keep people in check.

228
Q

What are the arguments in defence of self-regulation?

A
  • the unusual degree of skill and knowledge involved in professional work means that non-professionals are not equipped to evaluate or regulate it.
  • Professionals are responsible – they may be trusted to work conscientiously without supervision.
  • the profession itself is trusted to undertake the proper regulatory action on those rare occasions when an individual does not perform his work competently or ethically
229
Q

Describe the problems associated with self regulation

A
  • promotes a “self-deceiving vision of the objectivity and reliability of its knowledge and the virtues of its members”
  • leads to insularity
  • creates protected monopolies
  • optimises a profession’s own interests, not their clients
230
Q

How is quality ensured by bureaucracy?

A

control by management

231
Q

How is quality ensured by markets?

A

Choice leads the best service ending up at the top.

232
Q

How is quality ensured by professionalism?

A

Commitment and behaviour and identity leads to quality

233
Q

State some of the problems that occurred within the medical profession because of self regulation

A
  • Staff who were informed of problems found it difficult to act
  • Patients who told health professionals about problems were often greeted with disbelief or discredited
  • Whistleblowers were not always believed
  • NHS disciplinary procedures were found to be ‘cumbersome, costly and inhibiting’
  • Doctors were discouraged from raising concerns about each other
  • Etiquette rule forbid close monitoring of other doctors
  • There was a shared sense of personal vulnerability
  • There were high costs associated with speaking out